Events

Living with Autism

Carrie Albers ’97 was like a lot
of first-time moms. She often second-guessed herself after her son Eric was
born. Should she follow a strict nap schedule or be flexible with a sleep
routine? Should she worry about organic foods? Should she go back to work?
While many new mothers struggle with these common parenting concerns, Albers
was struggling with something else: autism.

Only she didn’t know it yet.

“Looking back to Eric’s earliest
months, my husband and I both agree there were signs that something wasn’t
quite right,” Albers said. “Eric was a very quiet baby. He didn’t do much
babbling. He had some smiles, but not many. He was also mesmerized by strange
objects, like ceiling fans.”

“We were concerned,” Albers
said, “but we were first-time parents. We had nothing to compare it to.”
However, when they took Eric to the pediatrician for his first birthday check
in, the doctor voiced concern. Eric wasn’t developing properly, the doctor
said, and recommended he be enrolled in an early intervention program through
the local school district.

“I realize now how fortunate we
were to have a pediatrician point out Eric’s delays at such an early age, but
at the time it was very upsetting. We left the doctor’s office that day feeling
like we were bad parents because our child wasn’t developing normally,” Albers
said. Albers and her husband, Michael Molde, did enroll Eric in their school district’s
early intervention program, but after a year of home visits, their concern was
amplified, not abated. “When Eric was two, he only had a vocabulary of five words,
and it was like pulling teeth to get him to say any of them,” Albers said. “We
took him to a speech therapist and that was successful. After four months, his
vocabulary was growing.”

A few months later, Eric’s
teachers broached the subject of autism. When Eric turned three, Albers and
Molde agreed to have him tested. The test results concluded Eric fit the autism
bill. “It was very hard to accept. I think my husband was much more accepting
of it than me,” Albers said. “In one way it was a relief. We could say, ‘This
is the problem.’ But on the other hand, every parent dreams about the life you
want for your child. Autism can have a crippling social component. All sorts of
things went through my head like will Eric ever have friends? Be happy? Will he
be a productive citizen? Will he ever live on his own?”

“Eric is delayed in both his
fine and gross motor skills,” Albers said. “It’s difficult for him to hold a
crayon or a toothbrush. He’s four, but he still wears diapers. He’s sensitive
to sounds,” she said. “He is very lovable and wants to interact with others,
but sometimes he doesn’t know how. His eye contact isn’t great and it’s almost
as if he assumes people can read his mind. I used to come home from work and
he’d say, ‘Hi Mommy, how was your day?’ again and again. Speech therapy has
helped that, but he still has trouble advancing a conversation.”

“But autism is a paradox. It’s a
puzzle,” Albers said. “There are all these things Eric struggles to do, but he
has this amazing memory. He knows all his numbers and letters and he can
spell.” He can also recite entire picture books and videos.

She acknowledges stories
reported by the media linking autism to vaccines—a link Albers refutes when it
comes to Eric. “His diagnosis is such that it seems very likely there’s a
genetic component. I know some parents do blame vaccines, but for Eric, that
just wasn’t the case. He wasn’t altered or changed in any way after a vaccine.”
And while she is aware of this ongoing debate, Albers is more interested in
teaching others to recognize the characteristics of autism and to understand
how the disorder manifests itself in daily life.

“Not every child with autism is going
to act like Dustin Hoffman in Rainman,” Albers said. “There is a lot of information
out there about autism, but there is also a lot of misunderstanding. It makes
me want to speak out.” Currently, she explained, Eric spends his days in private
speech training, occupational therapy, and an integrated preschool class. Next
year, when Eric turns five, Albers and Molde have their sights set on public
school.

“So far, Eric’s life has been at
home and with adults who understand what autism is,” Albers said. “We’ve been
very sheltered up to this point, and we know his autism is going to become more
of an issue. We’re hopeful that with all of this early intervention, which has
helped Eric make huge strides, we’ll be able to send him to a regular
kindergarten class next year.”

With any luck, Eric’s future
educators will have earned an Autism Spectrum Disorders Certificate from
Hamline University. The certificate program, which is offered through the
Graduate School of Education, is a thirteen-credit program geared toward
teachers who already have a license in special education. The course work
trains special educators to better understand autism. Graduates of the program
are armed with a plethora of teaching techniques proven to help students with
autism.

“The course work is clearly
designed for special educators,” said Kari Dunn Buron, coordinator of the
program. “We start with the assumption that you already understand the
philosophy and laws surrounding special education. We don’t waste time with
watered down materials like, ‘What is autism?’” But for those of us who don’t already
know, what is autism? It is a developmental disorder of the brain that has no
cure. Despite media attention linking autism to childhood vaccines, many medical
professionals dispute this charge. Instead, they claim a genetic component. Yet
many doctors are open to the idea that environmental pollutants exacerbate
autism symptoms, hence the ongoing controversy surrounding the disorder.

Autism affects a person’s communication
and social skills. It makes itself apparent during early childhood and occurs
in varying degrees of severity. For this reason, it is called a “spectrum
disorder.” Those familiar with the condition often use the term “ASD,” which
stands for Autism Spectrum Disorder, and will commonly refer to a child as
“being on the spectrum.” “Those on the spectrum approach social interactions
differently. Their social thinking really is at the core of their differences.
They might be perceived as mean, rude, or unruly,” said Dunn Buron. Many people
on the autism spectrum, she explained, have trouble maintaining eye contact.
Carrying a conversation is also problematic as those with autism find it
challenging to follow divergent topics. “Most people can’t pick out a person
with autism,” said Dunn Buron. “They don’t look any different. You just get
this feeling that something is off, but you can’t quite put your finger on it.”

“It used to be that children
with autism were institutionalized,” said Dunn Buron. However, in 1975 the
federal government passed the Individuals with Disabilities Education Act (IDEA),
which mandated children with disabilities receive a public education. Once the
law was enacted, children on the autism spectrum began attending public
schools.

In the early 1980s, Dunn Buron worked
for District 916, a school district servicing special education students in the
northeast corner of the Twin Cities. Along with a handful of other teachers in
that district, she began crafting programs—mostly through trial and error—to
educate children on the autism spectrum. In the 1990s, this group of teachers
began reaching out to teachers statewide through workshops and speaker series.
Dunn Buron authored training manuals, which have since been turned into seven
different books on ASD.

“At some point, I started
thinking about how a teacher could get a class on a transcript to prove they
were qualified to look for a job working with students with autism,” said Dunn
Buron. For several years, she struggled to find a university willing to house
the graduate-level autism teaching certificate she envisioned. In 2002, Hamline
offered to host the program. Today around 350 teachers take courses in the
certificate program and another 100 have already completed the certificate.

Luann Olsen Quayle ’89 is
grateful the Hamline autism certificate exists. Her two children—Eleanor and
Solomon, who are seven and five, respectively—have both been identified as
being on the spectrum. For their family, the road to getting the help they
needed was wrought with frustration. They changed pediatricians and encountered
family members and teachers alike who questioned the symptoms that Quayle and
her husband, Peter, swore they saw at home. However, now that both children
have been identified, they have benefited from contact with teachers who hold
ASD certificates from Hamline, especially Solomon.

The family finally began getting
the help they needed when Quayle contacted the Ramsey County referral line and
was connected to a service coordinator from their school district’s Early
Childhood Special Education (ECSE) team. The team determined that Solomon was eligible
for ECSE services under ASD and developed a plan for services with the family,
beginning with a teacher who visited their home to work with Solomon.

“Solomon had to be taught how to
play because he didn’t know how,” Quayle said. “He didn’t use toys in the way
they were intended. For example, he would take two toys and click them together
like cymbals.”

Solomon then began to attend ECSE
classes specially designed for children with autism, where teachers help
students learn to recognize their emotions, calm their anxieties, and better interact
with others.

“I knew it was going to be
difficult sending Solomon off to school. He was just two and a half when we put
him in a seat belt harness and got him on the bus,” said Quayle, who admitted she
broke down when the bus pulled away from her house. “But after three weeks,
Solomon was a different child. The things he was learning in class just
clicked. I think before he attended school, the world was a constant state of
chaos for him. But after just a short time, it was like the sunglasses came off
and suddenly the world started to make sense.”

After Solomon’s evaluation was complete,
the Quayles asked that the school district evaluate Eleanor for ASD as well.
She now receives special services in addition to being part of a mainstream classroom.

“There was a tremendous sense of
relief to know they were going to get they help they needed, but it was deflating,
too,” said Quayle of learning that both Solomon and Eleanor qualified for
special education status. “You have such high hopes for your children, and of
course you worry about their future. What you find out, though, is that you
might not have an average experience, but your kids will still hit the developmental
milestones that other kids hit, just not on the same schedule, and you also
begin to see that your kids have some pretty amazing gifts,” Quayle said. Solomon,
for example, seems destined to be a spelling champion. At the age of three, he
was already spelling words like koala, wombat, and penguin. He also possesses a
drumming, rhythmic flair. Eleanor is a speed demon able to outrun nearly any
kid in her class. She is highly social and eager to make friends.

“In no way do I believe that
either of my kids’ autism was caused by a vaccine. We can trace their behaviors
all the way back to their early days,” said Quayle. “Is the environment to
blame? Is genetics? I try not to focus on that. I don’t think I’ve ever said,
‘Why me? Why my kids?’ Instead, I think, ‘We’ve got one of each, a boy and a
girl. Now how do we help them to be the best Solomon and Eleanor they can be?’”

The Autism
Society of Minnesota (www.ausm.org) holds conferences, workshops and sponsors support
groups for parents with children with autism. Autism
Speaks (www.autismspeaks.org)
is another reputable source for information about autism. The book, Ten Things Every Child with Autism Wishes You Knew, by Ellen Notbohm
also comes highly recommended.